Me, my miracle & PTSD – Darcie & Frankie’s story

My little miracle Darcie-Lyla was born via emergency C-Section at 9.36pm on the 22nd November 2017 weighing a tiny 4lb 4oz, which was a good weight for 32+6 weeks gestation. She was born early due to me only having one kidney (I had my kidney removed 1 year prior to the day Darcie was born) and developing reduced kidney function from severe pre-eclampsia.

Due to me only having one kidney my pregnancy was closely monitored by consultants and my midwife. I was on a preventative antibiotic daily to stop any infections, had constant appointments for blood tests, urine samples, growth scans as well as scans to check both mine and Darcie’s kidneys. As I had fallen pregnant so close to me just having my kidney removed, I was warned that my body may not be able to carry my little girl as far as I ended up carrying her so every day was so precious keeping her safe inside of me enabling her to grow as much as she could. I carried on training at the gym and kept as healthy as I could to make sure I would give her the best possible start in life. My pregnancy was going very smoothly, and the consultants were happy with my progress until around 27 weeks I started getting rapid swelling in my hands and feet. This then progressed into fluid buildup in my legs, face and stomach. I was wearing slippers for work as I couldn’t get my feet into any shoes and I was getting pains in my legs when standing. My blood pressure was naturally lower than normal due to only having one kidney but as the weeks went on my blood pressure was slowly increasing so I was monitored more.

At 32 weeks I had a routine growth scan & appointment on the Friday with my consultant where protein was found in my urine and my bloods were sent off for testing. I immediately knew this meant something was up. That weekend I went home after being told not to worry and I had a gorgeous baby shower on the Sunday to take my mind off things. I wore flip flops and everyone there commented on how swollen I looked and that I looked like I was ready to pop. I didn’t think anything of this at the time and carried on as normal with the results of my tests playing on my mind.

On the Monday morning I received a phone call from the on-call midwife to attend the hospital for some more tests but it ‘wasn’t urgent’ so I carried on my plans for the day and went into the hospital around 4pm. Within 10 minutes I was hooked onto machines on a ward and had steroids pumped into me where the midwives were telling me how shocked they were that I had manage to carry so far. I had 3 doctors in the room telling me that they were going to deliver tonight. My mind went into pure panic mode. What had I done wrong? Will my baby be okay? Will I be able to see her? I had no pram, no car seat, no furniture. What was I going to do? Luckily, I had my friend with me to try and calm me down and tell me everything was going to be okay. I tried to tell myself I was in the best place.

The doctors managed to stabilize me for 2 days where I had a drip, catheter, bloods taken every 2 hours and scans done on my kidney. Until enough was enough and on the Wednesday night my little miracle came into the world with my friend & Darcie-Lyla’s godmother Leanne holding my hand throughout the C-Section.

Nothing can prepare you for the rollercoaster of a ride that lies ahead of you once your tiny, precious baby comes into the world but to be thrown into that roller coaster which is out of your control 7 weeks early is scary. Darcie-Lyla’s dad chose to walk away when I found out I was pregnant, so I went through the whole process on my own relying on close friends and family as my support. This was hard for me as I felt no one understood me. I had never really heard the word neonatal before my little girl was born never mind all the crazy language that the doctors and nurses used. It was so daunting I felt out of my depth right from the start. As a new first-time mother who was doing it all on her own, I didn’t know any different so just went along with everything that was thrown at me.

I didn’t get to see Darcie-Lyla when she was first born as she needed immediate help. She finally took her first few breaths on her own after an agonizing 90 seconds and the cry I heard I can still hear in my ears, the sigh of relief that my baby was okay. I managed to get my friend to take a picture of her before she was attached onto machines with tubes everywhere. To this day I cherish that photo as it’s the only photo I have of Darcie where I can see her beautiful face before all the tubes. Before I knew it, I had a doctor explaining to me that she had started to struggle breathing and needed some more help so was whisked straight off to NICU. I remember the room going extremely quiet. A room that was once filled with what felt like 101 people turned into around 5.

I was put onto a high dependency recovery ward with 2 other women who had their babies beside them. I spent all night on my own crying wishing that I could be with my baby, hold her, talk to her, wondering whether she would know who I was as I wasn’t the first person to hold or see her. Instead I was told that I needed to get better and strong for her. Now looking back the separation anxiety and the feeling that I didn’t have a strong enough bond started at this point. The guilt of not being able to do anything for my little girl, not even hold her tiny hands or talk to her, still plays on my mind today.

Nearly 24 hours after she was born, I finally got wheeled down to the NICU to see my miracle. Because everything had happened so fast, I didn’t have a name for her for 5 days, so she was referred to as baby Williamson. As I got wheeled into the intensive care room Darcie’s incubator was the first one. The number of machines, constant beeping, wires and tubes everywhere was overwhelming I didn’t know where to look or put myself. I was welcomed by the loveliest nurse Elle who looked after Darcie for her first few precious days. She told me not to worry about the machines and to try not to listen to them as that was for the nurses to worry about not me. But to this day the sound of them haunts me. I managed to have my first cuddle but was so scared to even touch her never mind have skin to skin. Elle reassured me, placed her on my chest down my hospital gown and made sure I was comfortable. I only managed to hold her for a little while as I was in so much pain from my C-section and uncomfortable with a catheter still attached to me. I felt like a failure as her mam already as I couldn’t do anything for her. I couldn’t even hold my baby without being in pain, I couldn’t stand by the incubator to see her properly, I couldn’t change her nappy. How was I meant to be a mother if someone else was doing all this for my baby?  By day 3 she was completely off CPAP and had a fairly easy ride through intensive care into high dependency.

Day 4 we were in high dependency where nurses weren’t sat at the end of the incubator but were around if needed. I was getting comfortable with all the different medicines, doing Darcie’s tube feeds and having skin to skin. I could walk down to the unit on my own and felt more at ease. We were having a cuddle on the nursing chair where Darcie-Lyla stopped breathing. 3 nurses rushed over to me and started working on her to wake her up (which felt like a lifetime). My heart sunk. I thought for a split second that I had lost her. From this day forward I was constantly watching her breathing and the monitors which I was told not to worry about but became my reassurance. I was petrified to do anything without a nurse watching me. She was on a sleep apnea mat and now looking back this is where my anxiety of an over protective premmie mammy kicked in as anything could happen at any point. I sat by her incubator every hour of the day as I still wasn’t discharged from hospital watching her to make sure she was still breathing. As a single mam I felt like I had to do it all on my own and couldn’t take it in turns to be with her as I felt like I had no one.

After a week I was discharged from hospital and had a break down on the unit as I didn’t want to leave my baby behind all on her own. I knew the nurses would look after her and she would be okay but I just couldn’t help but think she would forget who I was. I should have been walking out the hospital with a baby in my arms not on my own with a handful of tiny baby vests and bibs that needed washing. The feeling of leaving her behind felt like I had let her down and I didn’t feel like a ‘proper’ mammy. The guilt just kept building up.

As time went on, I spent every hour that I could by her side. Nurses were telling me I needed to rest but how could I when my baby needed me there. I was the only person she had. Darcie spent just over 2 weeks on the unit which doesn’t seem like much but felt like a life time. She struggled with feeding and was on special milk to help with weight gain. I brought her home at 3lb 10oz and felt like I could finally start being the mammy that I wanted to be. However, this didn’t seem to be the case. I started getting obsessive over her. I wouldn’t let anyone hold her as I was nervous, she would stop breathing. Everyone had to wash their hands before touching her and I wouldn’t let anyone feed her as I had to make sure she was getting enough milk to gain weight. She had severe reflux and we ended up back in hospital for 5 days at 8 weeks old. The constant hospital visits and appointments seem to never end and to this day I really struggle with. I came home from hospital feeling like my babies’ carer rather than her mammy. I was constantly drawing up 10 medicines to give her up to 6 times a day, cleaning syringes, collecting repeat prescriptions. But as I didn’t know any different, I was just plodding along thinking this was what being a mother feels like.

It wasn’t until Darcie-Lyla turned around 7 months I started to realise how I was feeling wasn’t quite right. I was having more ‘down’ days than ‘up’, I felt like being a mam was a chore and I didn’t feel like my little girl was mine. Everyone talks about this ‘bond’ you have with your baby is unbreakable and I just didn’t feel that. I was worried that because I didn’t get to hold or see my baby straight after she was born that this had really affected my bond. All her first milestones such as smiling, babbling, sitting up… were delayed and I struggled with giving my all to her but not getting anything back in return. It was such a lonely time. Darcie cried a lot with pain from reflux and recurrent kidney infections and I just felt that I wasn’t good enough for her. I didn’t know who to turn to and felt that if I spoke to friends or family, they would judge me and look at me as if I was crazy, that I couldn’t cope so I kept a lot to myself and carried on. Everyone kept telling me how ‘normal’ Darcie was and how she is doing well, and she doesn’t act or look like a premature baby. But all I could think in my head is that doesn’t take away everything that I have been through, the constant worry of what if and the constant hospital appointments that we still have regularly today. Then the guilt creeps back up of why do I not cherish the good times and all the amazing things Darcie has overcome. The strict routine that the NICU follow with feeds and cares, checking your baby’s temperature before you get them out for a cuddle stuck with me and gave me major anxiety around routine which I still struggle badly with today. No one prepares you for the life after a premature baby and it wasn’t until I found ‘Leo’s’ and could talk to people that had been through similar stories that I could relate to them about how I felt. I can talk to them without feeling like I sound silly and can ask as many questions as I want. I see a councilor once a week to talk through the trauma I went through as a single mammy to a premature baby which has helped me come to terms with my PTSD.      

The thing with PTSD is that it creeps up on you so some weeks I feel like I am managing then others I really struggle. I have found that talking, talking and to keep talking helps with my mental health and to overcome the trauma of having a premature baby and everything else that comes with it. No matter how much I feel like I’m getting on peoples nerves it’s so good to open up and ask for help. It is so important to have these kinds of conversations. It’s okay to not be okay and its okay to feel the way you feel. I am so proud of Darcie and everything she has taught me as her mam. I can only hope that Darcie will grow up to be proud of me for talking about my story and my mental health struggles.

Darcie-Lyla is now a gorgeous, happy, healthy 17-month-old little girl who is turning into a little diva. She never fails to amaze me with her fighting spirit with whatever is thrown at her. She is my rock and has guided me through my hardest days. I am reminded daily that everything I do I do it for her. I still struggle with anxiety today, but I am learning to cope and to remember to cherish the memories we are making together as a team!!

I am so grateful for Leo’s charity and everyone that has been involved in our care and supported me through my darkest of days. Everyone has their ‘down’ days but remember to give yourself a little love and credit for the amazing work we are doing as parents.     

Facts & Figures

79% of parents said a neonatal stay affected their mental health

Leo’s saw a 337% increase in need due to COVID-19

Did you know, reading to your baby in the NICU helps their development?

Leo's Neonatal

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